Facing Up to the Inevitable, in
Search of a Good Death
December 30, 2003
By JANE E. BRODY
The year was 1958, I was 16 and my
mother was lying in a
hospital bed connected to all sorts of tubes and was
of cancer. As her life slipped away, a nurse slapped
oxygen mask on her face and asked me to hold it.
no chance for either of us to say goodbye or "I love
I carry this medicalized memory of my mother's death
me to this day.
I am hardly alone. Cicely Saunders,
the founder of the
first modern hospice, said, "How people die remains
memories of those who live on."
Experts on end-of-life care say that
my mother's death was
handled wrong, all wrong. Chalk it up to ignorance
then. But 45 years later, despite a greatly enhanced
understanding of what happens to a person near the
life, little has changed in the way most people die
hospitals or nursing homes.
All too often, life is prolonged in
pain or discomfort,
with medical interventions and instruments precluding
opportunity for loved ones to say goodbye.
Such was the case for 22-year-old
Dave Fulkerson, who was
hit by a car while he was jogging with his
the intensive care unit, his family was not allowed
him for three hours. By then, he was no longer able
talk. Further, only one person was allowed in for
minutes every two hours. Eventually, his frustrated
girlfriend went home, and his parents fell asleep in
waiting room, only to be awakened by a nurse and told
son had died.
Rose Virani, a research specialist at
the City of Hope
National Medical Center in Duarte, Calif., and Dalia
a writer, recounted this case last May in The
Journal of Nursing in one of a series of articles on
end-of-life care. They lamented the lack of
between the health care team and hospital staff and
Fulkerson's family, intensifying the pain they
over his death.
"Poor communication is not the only
obstacle to a peaceful
death," the article noted. "Some patients are
receiving aggressive care until their last breath.
are undertreated, so much so that their final moments
steeped in physical pain. Still others receive
advice from doctors and nurses on the best course of
action, leaving them confused and unprepared for
As deaths from heart attacks decline
and life expectancy
rises, death has become a protracted process for more
more people. Accompanying this trend is a growing
medical professionals and families to understand what
happens during the last weeks, days and hours of life
what kind of action, or inaction, is most likely to
comfortable, peaceful, even beautiful end.
In a 1996 report endorsed by more
than 30 health care
groups, the American Geriatrics Society listed nine
important factors for quality care at the end of
alleviating physical and emotional symptoms; helping
patient maintain dignity; using treatments that
patient's wishes; avoiding "inappropriate aggressive
giving the patient and family quality time together;
the patient the best possible quality of life;
the family's financial burdens; informing patients
insurance coverage; and helping the family with
But six years later, a review of care
near the end of life
published by the geriatrics society revealed
"overwhelmingly disappointing results," Ms. Virani
Sofer reported. Far too many deaths were still marred
unwanted treatment and hospitalization, inadequate
of pain and other debilitating symptoms, and inept
The Final Days
When people are near death, physical
and mental changes
occur that can confuse and frighten those around them
result in inappropriate responses.
When someone can no longer take food
orally, the temptation
is to use a feeding tube. When a dying person gasps
air, the tendency is to reach for an oxygen mask. But
these desirable? Not necessarily, experts say.
In another article in the nursing
series, published in
July, Elizabeth Ford Pitorak, director of the Hospice
Institute of Hospice of the Western Reserve in
described what happens when death is imminent and the
has come to shift from healing to relief of symptoms.
"Active dying, the process of total
body system failure,
usually occurs over a period of 10 to 14 days,
can take as little as 24 hours," Ms. Pitorak wrote.
Usually, she noted, dying patients
swallowing becomes hard; and peripheral circulation
decreases, resulting in perspiration and clammy skin
feels cold to the touch. This should not be a sign to
on blankets, however, because "most dying patients
tolerate even the slightest weight on the feet or
extremities," she wrote.
Pulmonary congestion can prompt
patients to gasp for
breath. But, Ms. Pitorak said, supplying oxygen is
way to relieve this "air hunger" because a dying
usually cannot benefit from it.
Rather, opening windows, using a fan,
allowing space around
the patient's bed and administering morphine or some
opioid are the best ways to relieve a patient's
breathlessness and anxiety.
When difficulty swallowing makes
eating or drinking
impossible, the question of tube-feeding arises. But
patients are usually not hungry, Ms. Pitorak
"the absence of hydration and nutrition may even
analgesic euphoria" as ketone bodies build up in the
Even a little sugar administered intravenously can
counteract this euphoria, she noted.
Furthermore, efforts to feed a dying
patient orally can
result in vomiting, aspiration and a violent, rather
Ms. Pitorak observed that while IV
fluids can help
terminally ill patients who become delirious from
dehydration, they can also cause swelling, nausea and
in patients who are actively dying. But, she added,
patients on opioids have kidney failure - resulting
confusion, muscle spasms and seizures from a failure
clear the blood of the drug - hydration and less
As someone nears the end of life, it
is not unusual to turn
inward and become less communicative, even as much as
months before death. Ms. Pitorak noted that loved
should not confuse this withdrawal with rejection.
she said, it reflects the dying person's need to
outer world behind and focus on inner contemplation.
Experts advise families not to wait
until the last hours of
life to communicate with dying patients. In a study
terminally ill cancer patients, 56 were awake one
before they died, 44 percent were drowsy, but none
comatose. In the final six hours, however, only 8
were awake, 42 percent were drowsy and half were
precluding any further communication.
As death approaches, oral muscles
relax and secretions that
accumulate in the throat or chest can result in loud,
gurgling breathing sounds - the so-called death
that can be disturbing. But rather than trying to
these secretions, a process that can be discomforting
is rarely successful, Ms. Pitorak suggests
the patient to one side, elevating the head and, if
necessary, administering medication to reduce the
Dying patients may also moan or grunt
as they breathe, but
rarely is this a sign of pain, she noted. Appropriate
relief should always be provided because a patient in
cannot communicate effectively or die peacefully. She
that there was no evidence that pain-relieving drugs
Patients who ask whether they are
dying should be answered
honestly and reassured that those left behind will be
which Ms. Pitorak says is more helpful than telling
patients, "You can go now."
But she warned that even when a
patient can no longer
respond to sights or sounds, "hearing is the last
leave the body, so one should never say anything near
patient that one would not want him to hear."
How Doctors Feel
Families often complain about being
abandoned by physicians when nothing more can be done
reverse a progressive disease and death becomes
It may help families to realize that doctors, too,
experience a loss when they can no longer cure a
In The Journal of the American
Medical Association two
years ago, Dr. Diane E. Meier and Dr. R. Sean
palliative care specialists at Mount Sinai Medical
in New York, and Dr. Anthony L. Back of the
Washington School of Medicine explained that "a
unimproving health may lead the physician to feel
insecure, frustrated and inadequate."
"Rather than address these feelings,"
continued, "physicians may withdraw from patients."
Some doctors may rationalize that
their time can be better
spent caring for the living, Dr. Meier said in an
For example, a friend's husband was
being treated for
incurable lung cancer by a leading oncologist. When
became apparent that the therapy was not helping, the
oncologist, in effect, disappeared, assigning an
to the patient. After he died, the oncologist said
to the family, made no call and sent no card,
my friend and adding to her considerable grief.
When a patient dies, Ms. Pitorak has
this advice for the
professionals: Don't abandon the family. Don't leave
room without expressing your sympathy. And give the
members as much time as they want with the deceased
removing the body.